On November 13, 2023, CPR joined other members of the Consortium of Constituents with Disabilities (CCD) in commenting on the U.S. Department of Health and Human Services’ (HHS) proposed update to its regulations implementing Section 504 of the Rehabilitation Act of 1973, which prohibits disability discrimination by recipients of federal funding. Titled Discrimination on the Basis of Disability in Health and Human Service Programs or Activities, the proposed rulemaking is the first comprehensive update to the regulations since they were first promulgated over 45 years ago.
CPR was instrumental in drafting key sections of CCD’s comprehensive comments. Based upon CPR’s expertise in responding to COVID restrictions, challenging the unnecessary institutionalization of people with disabilities, and advancing alternatives to guardianship, CPR prepared CCD’s comments on these portions of the proposed regulations.
- Medical Treatment and Value Assessment – CPR endorsed regulatory language prohibiting disability-based discrimination in all aspects of medical treatment and highlighted the importance of an effective informed consent process, including the provision of medical advice and discussions of available treatment options. CPR also recommended that HHS recognize the administration of contingent electric shock for behavioral modification as another example of discrimination. CPR urged HHS to amend its proposed regulation on value assessment methods to include a prohibition on the discriminatory use of tools that devalue not only the extension of life years for people with disabilities, but also their quality of life, including treatment that alleviates suffering.
- Reasonable Modifications and Supported Decision-Making (SDM) – CPR strongly supported HHS’ express recognition of SDM as an example of a reasonable modification in policies, practices, or procedures that may be necessary to avoid unlawful disability-based discrimination. CPR recommended that the rule’s preamble include an example highlighting federal funding recipients’ obligations to permit designated support person(s) for individuals with disabilities to allow equal access to services and supports, noting that such reasonable modifications have been linked to the use of SDM.
- Integration – CPR recommended that the definition of “segregated setting” reference restrictions on individual choice that may be reflected in a setting’s policies or practices. CPR urged HHS to define the “most integrated setting” as one that enables people with disabilities to live as much as possible like people without disabilities and offered HHS three additional examples of discrimination. CPR urged HHS to make clear that people with disabilities are not required to apply for community services in order to trigger the public entity’s duty to provide services in the most integrated setting. CPR also recommended that the regulations require public entities to provide a meaningful and effective informed choice process which must be exhausted before anyone could be considered to have opposed community living. CPR agreed with HHS that a plaintiff is not required to wait until the harm of institutionalization or segregation occurs before bringing a claim and seeking prospective injunctive relief. Such “serious risk” should include an element of probability (likely to happen) and an element of temporality (in the foreseeable future), consistent with Department of Justice guidance and the weight of case law. CPR supported applying civil rights standards to all situations where people with disabilities receive or are eligible for healthcare, including under Medicaid, and during public health emergencies and disasters. CPR also asked HHS to explicitly state that increasing the capacity (“numerical cap”) of a waiver program is not, in and of itself, a fundamental alteration.